ver the two decades of Stroke
Connection, many stroke families
have shared stories like this: In
the beginning, there was fear,
and the fear was overwhelming.

After the fear came courage.

Then we learned about stroke,
rehabilitation and recovery, which
is individual and unique. And
then, finally, came perseverance.

“Stroke is often a shot out of the blue, and that makes it hard
to prepare for,” said Dr. Barry Jacobs, director of behavioral
sciences at Crozier-Keystone Family Medicine Residency
Program in Springfield, Penn., and the author of The Emotional
Survival Guide for Caregivers.

People who haven’t had any experience with stroke don’treally know what it is, and when it’s happening they areinevitably confused. Those who recognize stroke is happeningunderstand it is life threatening, and that causes a lot of fear.“People often respond to fear with denial or minimization:‘You’re fine. That tingling will go away soon,’” Dr. Jacobs said.“Some people are in denial and won’t take action to get theirKnowledge conquers fear, Dr. Jacobs said, but when weare overwhelmed with fear we’re not good listeners or criticalthinkers. At the moment of shock, the spouse can’t take in much.As the shock dissipates, spouses are able to understand more ofwhat’s happened and where the road ahead goes. “When spousescan have that path laid out for them, their feelings of beingoverwhelmed go away,” Dr. Jacobs said. “They know that there isa prescribed path and there are people who are knowledgeable toStabilizing the survivor reduces fear and begins recovery. Atfirst, there is often a lot of hope because recovery is variable, andone can always hope for complete recovery. “Since there are aminority of stroke survivors who do recover fully, that hope is notunwarranted,” Dr. Jacobs said. However, thereis also no exact science to know how fullysomeone will recover, and that uncertainty isstressful. So in order to maximize recovery,survivors need to take full advantage ofthe medical resources and rehabilitationpossibilities as early as possible. “Thereis a window of opportunity that we wantto take full advantage of,” Dr. Jacobs said. “To maximize thatopportunity, the caregiver has to be supportive. They’ve got togain some skills, especially in regard to rehab.” One way thatthe spouse can deal with the uncertainty is by becoming part ofthe treatment team and taking on a role that is really essential inimproving the survivor’s recovery.

Negotiating the cul-de-sac

It is common for caregivers to feel anger and guilt. If thesurvivor didn’t handle his or her health risk factors, the spousemay be angry about that. But it’s also important to realizethat it is not always possible to know the reasons for a stroke.“Whatever the cause, anger is not actually going to facilitate therecovery process,” Dr. Jacobs said. “The pertinent question is,“How I do I engage my loved one in rehab so they can maximizetheir recovery?’ If caregivers direct their anger at their loved ones,they might impede their survivor’s ability to engage in rehab. Ido think caregivers are justified in feeling anger at times, but thatanger needs to be addressed elsewhere. Lambasting the survivorcan actually be detrimental.”Caregivers may also feel guilt that they did not do enoughto prevent the stroke. “Guilt is a cul-de-sac,” Dr. Jacobs said. “Itdoesn’t lead anywhere. It doesn’t lead people to become betterproblem-solvers, it doesn’t lead them to take effective action.”

Bottom line, anger and guilt need to be ventilated elsewhere.
In the beginning the main effort needs to be put into engaging the
survivor in rehabilitation and making a big effort there. That push
is one that will make a difference in the future.